Imaani's story: “It’s hard being a kid. But it’s harder being a kid with arthritis.” 

Imaani from Cefn Hengoed, Wales, was 3 years old when diagnosed with juvenile idiopathic arthritis (JIA). Initially, doctors believed her persistent pain to be linked to a fall. But frequent A&E trips resulted in a referral to a specialist in Cardiff.  

The team at Cardiff diagnosed Imaani with JIA. She was then screened for and diagnosed with JIA-related uveitis – an inflammatory eye condition that can lead to vision loss if not quickly diagnosed and treated. After which, she began treatment for both conditions. 

Throughout her journey, Imaani (now 10), her parents and her older brother received both practical and emotional support from Arthritis UK (then Versus Arthritis). In particular, our Young People and Families Service (YPFS).  

A vocal advocate in the space of JIA, Imaani was also involved with our campaign to introduce a full paediatric rheumatology team in South Wales – a transformative service change which means that today, Imaani is cared for by a multi-disciplinary group. 

Imaani and her family currently work with Arthritis UK to help raise awareness of JIA and JIA-related uveitis – a mission that has seen Imaani visit the Senedd in Cardiff to share her experiences with politicians and decisionmakers including the First Minister.  

Imaani from Newport, Wales was just 3 years old when she was diagnosed with juvenile idiopathic arthritis (JIA). But her road to diagnosis wasn’t easy.  

Initially, doctors believed that Imaani’s persistent pain could be traced back to a bad fall. But Imaani’s symptoms got worse, not better. And soon, her parents were taking her to A&E up to three times a week. 

After several visits, Imaani was referred to a consultant in Cardiff. At the time, this was a team consisting of just one specialist nurse and one specialist consultant. The team may have been small, but their expertise was enormous, diagnosing Imaani with JIA at her very first appointment.  

The team also placed Imaani on treatment for her condition and screened her for JIA-related uveitis – an inflammatory condition that affects the eye’s middle layer (the uvea) and which can lead to vision loss if not quickly diagnosed and treated. 

The results showed that Imaani did in fact have advanced uveitis and she takes medicine to control the condition to this day.

Support from the Young People and Families' Service

Throughout her journey, Imaani (now 10) and her family received support from Arthritis UK (then Versus Arthritis). In particular, our Young People and Families Service (YPFS). Through YPFS, they found both practical and emotional support as they attended events and met other families who had experienced similar challenges.  

Imaani is especially thankful for the way in which the YPFS community allowed her to connect with people who could relate to her experiences, giving her confidence and a safe space to share. But Imaani wasn’t the only one who benefitted; her parents and older brother also found great support within the community.  

Of course, younger people with arthritis face unique challenges. For example, schools can find it difficult to understand how long-term health conditions can affect them. And although the YPFS team can offer advice and practical tips on this topic, school weighed on Imaani’s mind when we asked her what a future free from arthritis would mean to her. 

She says: “It would mean I don't have to worry about pain and hiding my pain at school, missing school which interrupts my learning, taking continuous medications and having many blood tests.” 

Raising awareness of JIA

Today, Imaani and her family work with us to help raise awareness of JIA and JIA-related uveitis – a mission that has even seen Imaani visit the Senedd in Cardiff to share her experiences with politicians and decision makers including the First Minister.  

Imaani’s experiences also prompted her to become involved with our campaign to introduce a full paediatric rheumatology team in South Wales – a transformative service change which means that today, Imaani is cared for by a multi-disciplinary group which includes therapists, a clinical psychologist and an eye specialist. Allowing for better outcomes as healthcare professionals work together to design complementary care plans. 

“I am keen to share my story so that people know what it feels like to live with juvenile arthritis and the fact that I don't let it stop me achieving,” says Imaani. “I am showing the world juvenile arthritis can affect anyone. It doesn't matter about race, colour, religion or your background.”